Guillian-Barré Syndrome
 

Is there anyone out there who has been diagnosed as having GBS, but not being able to get better? I was diagnosed in Jan '15 and have had 8 rounds of IVIG and recently was put on Cellcept. I am being referred to KU's neuromuscular dept because I continue to have relapses almost on a monthly basis. My neurologist wants a second opinion because he says this is atypical of GBS. My symptoms have also been atypical of GBS but was diagnosed by one of the recommended doctors for treating GBS.


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There are other acute onset neuropathies--
 

--that can mimic the presentation of GBS; in fact, sub-acute presentations of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) can be hard to distinguish from GBS.

In fact, CIDP, which often follows a relapsing-remitting pattern, had been referred to as the chronic form of GBS. Even with acute onset GBS, there are many who experience "flares" and some degree of residual effect.

Take a look here to see if any of your symptoms match up:

http://neuromuscular.wustl.edu/time/...htm#neuropathy

http://neuromuscular.wustl.edu/antib...mdem.html#cidp

Thank you, yes my Dr has added that diagnosis of CIDP as a possible diagnosis. I have looked over both diagnosis and their symptoms and I don't fully fit in either category. I just want answers when I haven't gotten any. Feel like my life has been taken from me when I have live day to day on how I feel on how much I can or can't do.


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I got GBS October 2014. My severe fatigue has improved but tire more easily than before GBS. The neuropathy in my feet was improving but going back to what it was the 1st 6 months (could be due to my spinal stenosis though). I often feel like I'm relapsing because of my severe back and leg pain but last week I went to the ER and my strength and reflexes were normal. So I'm hoping that this will all go away after my back surgery in two weeks. I hope you get an answer soon and find a treatment that works.


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I actually received a new diagnoses of CIDP back in January and am now on IVIG therapy every 3 weeks. It causes me some adverse effects but I am much better now. I think the higher dose and getting the treatments like clock work are helping but I'm also on CellCept which I don't quite like but doing what I have to do to get better!


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